Saturday, April 3, 2010

Osteo Again?

There are some trends emerging for Skip that may indicate osteomyelitis (bone infection) is back or was never really eradicated while in the hospital/rehab. At Skip's last wound care center visit, the tunnel in her wound, which is really the only significant part left, had actually lengthened, increasing in length by 20% from the visit 2 weeks prior. This tunnel is what had exposed the bone to infection in the first place, as I understand it. The fact that it's been resistant to shrinkage and now has grown could be a sign of infection. In addition, she had a blood test that indicates she does have an infection somewhere. Yesterday, I took her to the hospital to have an x-ray. The infectious disease doc that we saw at the wound clinic ordered this. He said an MRI can show evidence of a bone infection for a long time after it's been wiped out; the x-ray will show if there's been bone loss. I suspect he'll read the x-ray on Monday and I hope we hear something definitive right away.

The prospect of osteo has Skip worried. I don't think I'd characterize how I feel as worried, but I am a bit concerned about what's required to wipe it out if the diagnosis is osteomyelitis and how that will affect our current, stable status. We'd be looking at another month-long course of IV antibiotics. Medicare, for some unfathomable reason, does not pay for home infusion! How misguided is that? What, they want to send someone like Skip who only needs IV antibiotics to an acute rehab hospital, pay for the care there, expose her to other infections where instead she could be treated at home with me doing most of the IV administration? I understand there are some ways to work around this Medicare constraint, but we'll have to cross that bridge when we get to it.

So let's assume we can do the IV at home. She'd have to have a PICC line inserted, and I expect that would be done in a fairly sterile hospital setting. Then, someone would have to train me on the infusion approach, including troubleshooting and when to determine the problem can't be solved by me and I need to get a pro in. Then, I presume she'd have to get the drugs administered twice a day for 28 days (this was the course used at the hospital). I expect there'd be complications, as she had them in rehab. The PICC line had to be replaced twice, or even three times, during the 4 week period.

Part of me is sort of interested in learning how to do this as I expect most of the time, it's very straightforward to administer IV's at home. Another part, though, is concerned about how much of a time eater this could be. We'll definitely have to work out a schedule of administration that is outside of work hours, which shouldn't be difficult.

Well, perhaps all this ruminating by me is unnecessary. Maybe the doc will call on Monday and say all is well. But as a character in a favorite childhood book, The Phantom Toolbooth, said: "expect the unexpected and the unexpected never happens."

I have Aetna Medicare and they pay for my home infusions - whether it be steroids or antibiotics. I think I had a small copay of about $8.00 per day which wasn't bad for me.

I can't imagine the insurance wanting to pay all the extra costs of inpatient care in any facility when the object is to cut costs. A phone call to Obama may be necessary for intervention!!!

Anyway, it is fairly easy to flush the IV and hook up the new infusion bag each time and then flush the IV again. Each infusion is pre-measured for home use and the flushes are prepackaged for convenience. A home care nurse comes every day or every other day to check on patients. And there is always a phone number (24 hour) for you to call if needed.

I didn't have to have a PICC line, just a regular IV with hep lock, but in case Skip's veins aren't so good, maybe the PICC line would be best.

I hope you don't have to go that route (inpatient) as it is very worrisome for both of you.

I hope it all works out that she can stay at home to get whatever care she needs.

As you have been her caregiver for so long, you have more clout than you think you do -- if you say she is going to stay at home to get the IV and Skip agrees, the Patient Coordinator and Social workers do listen and find ways to accommodate.

If Skip has anything else besides Medicare insurance, they can work in tandem. IF she has nothing else, then the drug company can help out (they have in the past for me when I only had BC/BS in the 1990's) because they are in the business of keeping customers happy.

I know you can handle this -- look how far you have come all these years. You have been doing a great job and Skip is a real trooper!

Anne - thanks so much for that note, especially as you have experienced the home IV. Sounds pretty straightforward most of the time. Skip does have Medex with drug coverage through BCBS. You're so right that this is a completely crazy rule with Medicare, costing much more for inpatient delivery than if she stayed at home. If IV antibiotics are required, we'll work very hard to ensure they're delivered at home.

Cranky - I know this is pretty lame consolation, but Skip's experience has convinced me to be much more attentive to proto-pressure sores than I might otherwise have been. I no longer take the phrase "pain in the butt" lightly!

If it turns out that Skip needs IV antibiotics, I hope you can convince your insurance company to recognize their own best interest. Duh.

Zoom - definitely use this as an object lesson. One thing we didn't realize before is that the damage to the underlying tissue that would eventually turn into the sore occurred well before there was any superficial evidence of a wound.

Well, when your insurance company is the federal government, logic isn't always going to work, but we'll try!